Barriers to healthcare access and experiences of stigma: Findings from a coproduced Long Covid case‐finding study

Abstract Background and Aim Long Covid is often stigmatised, particularly in people who are disadvantaged within society. This may prevent them from seeking help and could lead to widening health inequalities. This coproduced study with a Community Advisory Board (CAB) of people with Long Covid aimed to understand healthcare and wider barriers and stigma experienced by people with probable Long Covid. Methods An active case finding approach was employed to find adults with probable, but not yet clinically diagnosed, Long Covid in two localities in London (Camden and Merton) and Derbyshire, England. Interviews explored the barriers to care and the stigma faced by participants and were analysed thematically. This study forms part of the STIMULATE‐ICP Collaboration. Findings Twenty‐three interviews were completed. Participants reported limited awareness of what Long Covid is and the available pathways to management. There was considerable self‐doubt among participants, sometimes reinforced by interactions with healthcare professionals (HCPs). Participants questioned their deservedness in seeking healthcare support for their symptoms. Hesitancy to engage with healthcare services was motivated by fear of needing more investigation and concerns regarding judgement about the ability to carry out caregiving responsibilities. It was also motivated by the complexity of the clinical presentation and fear of all symptoms being attributed to poor mental health. Participants also reported trying to avoid overburdening the health system. These difficulties were compounded by experiences of stigma and discrimination. The emerging themes reaffirmed a framework of epistemic injustice in relation to Long Covid, where creating, interpreting and conveying knowledge has varied credibility based on the teller's identity characteristics and/or the level of their interpretive resources. Conclusion We have codeveloped recommendations based on the findings. These include early signposting to services, dedicating protected time to listening to people with Long Covid, providing a holistic approach in care pathways, and working to mitigate stigma. Regardless of the diagnosis, people experiencing new symptoms must be encouraged to seek timely medical help. Clear public health messaging is needed among communities already disadvantaged by epistemic injustice to raise awareness of Long Covid, and to share stories that encourage seeking care and to illustrate the adverse effects of stigma. Patient or Public Contribution This study was coproduced with a CAB made up of 23 members including HCPs, people with lived experience of Long Covid and other stakeholders.


| BACKGROUND
Long Covid is the patient-coined term for prolonged ill health following acute infection with severe acute respiratory syndrome coronavirus 2 (SARS CoV-2). 1,2[11] Health inequalities exist between different population groups in England. 12,13Inequalities were evident before COVID-19 but the pandemic has exacerbated them and increased their visibility. 12VID-19 resulted in higher infection and mortality rates for ethnic minorities and people living in more deprived areas. 14,15Little is known about disadvantaged groups' experiences of Long Covid.Some evidence suggests that people living in more deprived communities and who belong to some ethnic minority backgrounds are more likely to experience Long Covid than those living in the least deprived areas or those of White ethnicity [16][17][18] but conversely may be underrepresented in post-COVID services. 19This could suggest fewer people with Long Covid symptoms from these disadvantaged groups are receiving Long Covid care, which has the potential to increase health inequalities.
Emerging evidence suggests that Long Covid is often stigmatised. 20,21Analysis of survey data of almost 900 people living with Long Covid in the United Kingdom found widespread stigmas experienced by people with Long Covid. 20In this study, the Long Covid Stigma Scale (LCSS) measured three recognised mechanisms of stigma.[24][25] Stigma can occur by not conforming to standards that society calls normal. 26Stigmatised people are thus 'disqualified from full social acceptance' due to an attribute deemed to be 'deeply discrediting'. 26A wide range of long-term conditions (LTCs) can be considered stigmatising 27 and stigma is known to adversely affect help-seeking, as well as physical and mental health outcomes. 28though anyone can experience stigma, its effects can be amplified for socioeconomically disadvantaged and minority groups. 28periences and expectations of discrimination can lead to poor engagement with healthcare services. 12Choices about revealing illness status are often bound up with expected stigmatising consequences for people with chronic conditions. 29Mental health stigma 28,30 and weightbased prejudice 28,31 can prevent help-seeking and the intersection with ethnicity, culture and gender can increase its impact. 28Additionally, experiences or feelings of social exclusion are not uncommon in health stigma literature. 28Similarly, internalised stigma, including feelings of shame or self-comparisons with others, has been associated with chronic conditions. 29e experiences of people living with Long Covid can create epistemic injustice as suggested by Ireson et al. 32 In their analysis of online patient stories, they found that people with Long Covid are frequently disbelieved with their testimonies often not taken seriously.Epistemic injustice is inequality surrounding knowledge 33 and can occur as 'hermeneutical injustice' (where an individual does not have the means to interpret their 'experiences') and 'testimonial injustice' (discriminatory mistrust of an individual's knowledge). 33th are relevant in the case of Long Covid.It is, therefore important to consider how multiple dimensions of disadvantage intersect when exploring health stigma and other barriers to care.
We aimed to coproduce a community-based approach for identifying people with probable Long Covid, who have not yet received a formal clinical diagnosis, for the purpose of understanding the barriers and stigma they face when attempting to access support and care.

| Coproduction with a Community Advisory Board (CAB)
Research coproduction is where researchers work with public contributors, including patients, to design and/or conduct research. 35,36A key benefit is generating knowledge that is more meaningful to the population group being studied. 36,37In this study, a CAB was formed.This was made up of 10 healthcare professionals (HCPs) (including seven who are also living with Long Covid), eight people living with, or caring for children with, Long Covid and five other stakeholders from voluntary organisations and local public health bodies.
Six CAB meetings took place between February 2022 and July 2023.Discussions in these meetings centred around defining and refining study aims and methodology, planning the implementation of study findings and dissemination.The CAB also contributed to the design, review and production of study documents and members are coauthors on this paper.

| Study design
The purpose of using an active case finding approach was to find individual cases of probable Long Covid that have not been clinically diagnosed.This study was initially conducted in the London Borough of Camden, England.Two other sites later joined the study: the London Borough of Merton and the county of Derbyshire, England.9][40] Camden is the most ethnically diverse area-41% of people residing in Camden come from an ethnic minority background. 38An estimated 37% of Merton residents are from an ethnic minority group and inequalities exist between the east and west of the borough. 39,41In contrast to the London sites, a large part of Derbyshire is rural and 6.3% of the population are from an ethnic minority background. 42leaflet raising awareness of the study and some of the most common symptoms of Long Covid was disseminated within communities in the participating localities, with the aid of community organisations, local authorities and social prescribing teams. 34Sharing study materials via voluntary organisations was the most fruitful way to access communities in this study.Individuals who met the eligibility criteria were assumed to have probable Long Covid and were invited to take part in a qualitative interview.The eligibility criteria were agreed with the CAB (Figure 1, Supporting Information S1: Materials A and B) and are detailed in the study protocol. 34ffered a shopping voucher as a thank you gesture, and a referral to a social prescribing service to receive personalised support.Social prescribing aims to improve mental and physical health through referral to community-based services for holistic support. 43Participants were also offered a letter indicating study participation that could be taken to their primary care team.A full outline of the methods is in the study protocol. 34

| Analysis
Thematic analysis, based on the approach described by Braun and Clarke, 44,45 was employed to analyse the interviews.After becoming familiar with the transcripts, D. C. completed initial coding using predominantly an inductive approach using NVivo. 46Some codes matched the concepts studied in the LCSS so more deductive coding was applied in relation to these questions.M. R. completed additional coding on a subsample of transcripts to ensure intercoder reliability.
Once coding had been completed D. C., M. R. and N. A. A. met multiple times to discuss potential themes.The LCSS informed the creation of themes related to experiences of enacted, anticipated and internalised stigma. 20A thematic framework was developed in light of the findings and agreed upon before drafting this paper.

| RESULTS
Twenty-three semi-structured interviews were completed with participants who reported varying symptoms consistent with Long Covid, but no known clinical diagnosis.Information regarding these symptoms can be found in Supporting Information S1: Material C.
Participants' characteristics can be found in Table 1.Most participants were from the Camden locality.
A minority were unsure about their Long Covid diagnosis status.
It was assumed that these participants did not have a formal diagnosis and so they were included in this study.This was on the basis that some of these participants noted Long Covid had been suggested as a possibility by HCPs, but they had had no follow-up investigations.Two of the participants believed referrals might have been made but these had not yet been fulfilled.
Four key themes were identified during analysis: (1) Uncertainty and Long Covid awareness, (2) Barriers to engagement with the healthcare system, (3) Experiences and perceptions of stigma and discrimination and (4) Sources of support.The following sections focus on these themes.

White)
Participants felt that their symptoms were not a priority to a health system which they considered to be overloaded.
Additionally, engaging with healthcare was considered a part of a nonhelp-seeking identity for some participants.Some participants expressed how they would have to be exceptionally unwell to consider reaching out.
I'm not that kind of, I don't think I can even knock someone's door to ask for help.(Female, 50-59, mixed race) Hesitancy in accessing care was felt to be exacerbated by perceived problems in primary care, such as long waiting times for appointments, limited appointment times, only being able to focus on one symptom during consultations or waiting for secondary care referrals for individual symptoms to be fulfilled before any further steps are taken.

| Nature of multisystem symptoms makes accessing care difficult
For some, the very nature of Long Covid symptoms made accessing treatment or care difficult.One participant was hesitant to seek care from her general practitioner (GP) because of attribution of new symptoms to pre-existing health problems.
They tend to always assume that my symptoms are consistent with my chronic long-term health problem.
(Female, 50-59, White British) The fluctuating and relapsing nature of symptoms, which can occur with Long Covid, 1,4-6 acted as a barrier to obtaining care.
Just when you think, oh, they've gone, up they pop.
(Female, 50-59, White British) Sometimes this meant that symptoms were not present at the time of the healthcare consultations or would disappear soon after.
Thus, the changing nature of symptoms can mean that patients do not return for follow-up care.
Sometimes one symptom was more prominent than other experienced symptoms.Unsurprisingly, these participants sought care for the symptom impacting them the most, which resulted in other symptoms being overlooked by the participant and HCPs.This can result in the pattern of symptoms of Long Covid being missed.
One participant had a flare-up of her existing health condition after an acute infection with COVID- Similarly, others did not want to be labelled an 'idiot', receive a 'quizzical look', or be considered 'awkward'.This participant also described how he previously contracted Monkeypox, sought support and was 'rebuffed a few times', despite experiencing symptoms and identifying as being in an at-risk demographic, before being given a positive diagnosis weeks later.For these participants, their avoidance of dismissal was preventing them from seeking care for their symptoms.
Disbelief was seen as resulting from a lack of understanding or due to varying symptoms.Some participants felt that disbelief extended beyond the community into the medical profession.One participant asked the interviewer 'how accepting is the healthcare profession that Long Covid is real?' (Female, 60-69, White British), suggesting that she was unsure if Long Covid is taken seriously by HCPs.
A few participants had interactions with others who expressed disbelief, but mostly this was a perception.Some participants saw dismissal as proof of disbelief.
Participants feared judgement from others due to the impact of symptoms or other people's presumptions of the impact of symptoms.
They will presume that … you're not on the ball.
(Female, 60-69, White British) This fear of judgement was a common reason for participants not talking to others about their symptoms.One participant, early on during her interview, stated that she did not feel comfortable talking about mental health with her GP, highlighting the intersectionality of religious background with mental health stigma was considered beneficial for people living with Long Covid.Some considered hybrid working and working flexibly advantageous to them when suffering Long Covid symptoms.

| Desired healthcare expectations
Participants offered ways to decrease barriers to healthcare for those living with Long Covid symptoms, such as: changes to the primary care system including making it easier to get an appointment, more face-to-face appointments and longer appointment times that are empathetic to patient need.Participants wanted to feel listened to, unpressured by time constraints, have room to explore symptoms, reassurance that they are not wasting time, and to receive advice, treatment, signposting or referrals where appropriate from HCPs (Supporting Information S1: Material D, Quote 5).
Dedicated services for Long Covid were popular among participants, and these were in the form of helplines, webpages, specific appointments in GP practices for Long Covid and specialist clinics for people with Long Covid symptoms (Supporting Information S1: Material D, Quote 6).Some participants felt that access to these services should be available without visiting a GP.
Alternative forms of support were used when the NHS did not meet participants' needs and participants were open to social and community forms of support.Furthermore, there was a desire for change within primary care as well as dedicated Long Covid services.

| DISCUSSION
To our knowledge, this study is the first to coproduce a communitybased approach to identify and include participants with probable Long Covid who may not be recognised as such by the health system.
The coproduction process meant the inclusion criteria directly reflected the experiences of people living with Long Covid, which in turn meant that the study leaflet resonated with the intended audience.Subsequently, this led to engagement from people living with Long Covid symptoms that had previously not come forward for support.
It is evident from this analysis that a lack of adequate awareness of Long Covid, self-doubt, hesitancy in seeking care and the nature of multisystem and changing symptoms act as barriers to seeking care for Long Covid symptoms.Participants' interviews also revealed experiences of discrimination, anticipated and internalised stigma which can further impede help-seeking behaviour.
Some findings from this study show similarities with other Long Covid studies.Most notably, the varying range of symptoms experienced, [4][5][6][7][8] the lack of Long Covid awareness among some population groups, 7,47,48 self-doubt regarding Long Covid as a cause for illness, 7 symptoms as a barrier to accessing care, 47 problems accessing primary care, 6,10,49 experiences of symptoms being dismissed, 10,32,50 seeking support outside the NHS and making behavioural changes, 6,11,[49][50][51] as well as stigma 6,50,51 and discrimination 49 which can all act as barriers to obtaining support and treatment.
Parallels can also be drawn with Ireson et al. 32 who suggest the experiences of people living with Long Covid, equate to epistemic injustice.As Bhakuni and Abimbola 52 explain, testimonial injustice happens when a hearer prejudicially ascribes lower credibility to a speaker's words, for example, through acts that silence, undervalue, or distort.Hermeneutical (or Interpretive) injustice happens with someone struggles to make sense of and share their experience of the world, owing to a gap in available legitimised collective sensemaking resources.This particularly occurs when the experiences of marginalised individuals or groups are not understood by themselves or by others because those experiences do not fit any concepts known to them (or to others).Our findings fit under both testimonial and hermeneutical injustice frameworks (Figure 2).
There is inherently a power imbalance in the patient-HCP relationship.HCPs are unsurprisingly considered more medically knowledgeable, and they also have the power to decide suitable treatment options for different patients.These options are decided based on which patient narratives HCPs define as believable or unbelievable (testimonial injustice). 53,54This can result in some patients being dismissed, as in this study, and in similar under-recognised and under-researched conditions such as chronic pain or myalgic encephalomyelitis. 54,55On the other hand, patients may not have the ability to convey their symptoms in a way that is understandable by HCPs (hermeneutical injustice). 53,54These experiences are compounded by inadequate awareness, knowledge and understanding of Long Covid, both within the community and at the healthcare level, due to its novel status, and also perhaps due to inadequate reference to Long Covid as a result of deficient public health messaging about the potential long-term health effects of COVID-19.
Experiences of both anticipated and internalised stigma were presented in this study.One explanation could be because individuals have internalised expectations of how they should be, and if they do not meet these expectations, they feel stigmatised. 27For people with Long Covid, this could partly be due to COVID-19 being described as a 'mild', self-limiting illness that most people recover from quickly-a definition which is evidently contested. 32,50,56,57Those who experience ongoing symptoms from COVID-19 are situated outside this dominant definition of 'mildness' which can result in feelings of being flawed. 27is study advances the health stigma literature by highlighting how stigma can lead to the discounting of the experiences of people with Long Covid due to negative stereotyping.When multiple forms of marginalisation are compounded by experiencing a stigmatised health condition, this results in layered or intersectional stigma, 58,59 which has been described in other health conditions too.
Experiences of stigma can prevent people living with Long Covid from seeking and/or receiving much-needed support for their symptoms.They can lead to self-doubt and hesitancy in seeking care.Self-doubt surrounding the cause of, and finding other explanations for, symptoms can act as a barrier to obtaining care for chronic conditions. 29Bury explains this as a way of attempting to regain some 'control' as well as minimise the perceived damage to identities. 29 I G U R E 2 Epistemic injustice in Long Covid as a framework for the study findings.Graphic created using Canva software.
F I G U R E 3 Long Covid active case finding study recommendations.Graphic created using Canva software.
Unlike in other studies, 6,50,51 these participants did not identify online communities as a key source of support.This could be due to the lack of awareness of Long Covid in this group.Participants were receptive to potential forms of social and community support, nonetheless.Stigma can be minimised when people know that they are not alone in their experiences.Additionally, financial and economic support were considered useful, strengthening the argument that Long Covid, like other LTCs, can create social and economic burdens.
Semi-structured interviews were completed with people with probable Long Covid across Camden, Merton and Derbyshire.The interview topic guide was coproduced with the CAB.This guide consisted of predominantly open questions investigating barriers to obtaining care for Long Covid symptoms.It also included some questions from the LCSS 20 exploring possible stigmatising experiences across the three mechanisms of enacted (overt experiences of being treated unfairly), anticipated (expectation of being treated unfairly) and internalised (adopting negative stereotyping and applying to self) stigma.Prompts were used to find out the context CLUTTERBUCK ET AL. | 3 of 16 of these experiences, and to provide an in-depth exploration of the three stigma mechanisms.All interviews were conducted by D. C. between August 2022 and May 2023.Most completed by videocall, four were completed via a telephone call.Informed consent was obtained from participants before undertaking the interviews.Participants were reminded at the beginning of the interviews that study eligibility did not constitute a clinical diagnosis of Long Covid.Upon completion of the interview, participants were F I G U R E 1 Study eligibility flow chart.

3. 1 |
Theme 1: Uncertainty and Long Covid awareness 3.1.1| Awareness of Long Covid and Long Covid support services A lack of adequate awareness of Long Covid was prominent in the accounts of participants.Some participants were not aware of the existence of Long Covid as a health condition, others had some awareness but did not equate their symptoms to Long Covid.My symptoms as such have never really gone away but I've not always attributed them to Long Covid or whatever.(Female, 60-69, White British) Participants were more likely to describe not feeling 'normal' or not feeling 'the same since' their COVID-19 infection.Others tended to connect Long Covid with more 'severe' symptoms.Two participants only T A B L E 1 Participant characteristics.

4 , 9
Future research should explore which forms of social and community support-both online and offline-are useful for different population groups living with Long Covid, with the particular aim of evaluating what works to reduce health inequalities.The study recommendations are derived from the findings and are summarised in Figure 3.We are producing an online tool to facilitate help-seeking in people with Long Covid who are struggling to access support.It is important to recognise that although all participants in this study reported symptoms consistent with Long Covid, alternative diagnoses are possible.Regardless of the diagnosis, people living with these symptoms must be encouraged to seek medical help and diagnosis.The coproduced nature of this study is a strength.Including the voices of people with lived experience of Long Covid has resulted in research that is more relevant to others experiencing Long Covid symptoms.The case finding strategy used in this study offers one way to identify cases of probable Long Covid.Long Covid cannot be proven by one diagnostic test and is usually diagnosed based on symptoms.The eligibility and screening criteria used in this study are based on the WHO Clinical Case Definition of post-COVID-19 condition. 1In comparison with other Long Covid studies, our study also offers a different perspective of viewing the barriers that people with Long Covid face in accessing support through the lens of stigma and provides depth to the LCSS stigma dimensions.Despite efforts aimed at doing so, we were unable to recruit younger people (<29 years), so we do not know if the experiences for people with Long Covid symptoms in their late teens or twenties are the same as for older age groups.Future research should attempt to include the experiences of young adults.We successfully employed a codesigned active case finding strategy to identify cases of probable Long Covid in three local communities in England.Our findings have highlighted the different, sometimes intersecting, barriers that can prevent people living with Long Covid from obtaining a diagnosis, treatment, or care for their symptoms.Despite Long Covid being a relatively new illness, it can be a stigmatising experience congruent with epistemic injustice.Action on raising awareness, mitigating stigma, listening to people with lived experience, and signposting to early help in the health and wider services are needed.